What research should we be doing?

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  • arpie
    arpie Member Posts: 7,621 ✭
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    Many thanks for that pic, @JJ70 - I'd not seen that one before!

  • Janet A
    Janet A Member Posts: 281 ✭
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    Hello @wingman

    I copied your questions because I would have forgotten them if I hadn't!!
    What outcomes should we be working towards that you think are most important? 
    I think the biggest issue is we are needing to find a new normal I hear this so often and I see girls struggling to find that new normal. We sit in on plenty of clinical appointments that don't address this?

    Are there issues to do with breast cancer diagnosis/treatment/survivorship/anything else that you feel are being overlooked in research? To answer this question, I guess we don't realize how life is going to be after treatment. I have found physiologically I am not the same, whilst I am grateful for all the hard work researchers have put into treatment and enhanced better outcomes I wonder if there are studies into the long term effects of treatment? 
    I have been assisting someone going through treatment now, she isn't coping well at all with the effects of treatment, in fact I think she's about to have a breakdown. I don't think we are made aware of what might happen to us whilst doing treatment? 

    I have started a group called Breast Cancer, Childlessness and Us. I have read we as childless women are at a greater risk of being diagnosed because we haven't gone through the process of childbirth. What research do you know of that I can follow to be better informed? I have also found this subject lands on deaf ears a lot of the time and as a 'group' in society we are largely ignored and culturally misunderstood.

    I am wondering what research has been done in this area of survivorship in the lack of family support we have in our circumstance and the lack of support groups who cater for this demographic?
    I also notice living in a fairly remote area south of Mackay and when I traveled 1000 kms for radiation treatment there were other women from Charleville and other areas, the impact of treatment must be different for us? A lot of support groups are driven for city dwellers I am curious if any research has been done in this area also?
    I have a shift working husband which is the norm for this area so I spent many hours alone through treatment, going neutrapenic home alone and making sure the property was left in a good state with the animals and travel to Mackay for the hospital. I'm not sure of the impact this has had on me mentally and how we cope after treatment after our own journeys which are so vastly different? 

    Are you thinking i had to ask! I'd like to know what you think.

    Cheers Janet
  • arpie
    arpie Member Posts: 7,621 ✭
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    https://www.niim.com.au/research/circulating-tumour-cells-ctc-trial

    This one sounds interesting for all cancers ..... but a nursing friend is concerned that the trial is not being done thru a recognised research hospital ..... it would be interesting to hear your thoughts on it @wingman

  • Beryl C.
    Beryl C. Member Posts: 270 ✭
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    There is an area of research called psycho oncology to investigate the impacts of cancer beyond the physical. One article I read suggested that the very fact of being diagnosed was sufficient to increase anxiety and stress and impact on short term memory. These articles are medical research and present a difficult read. I've had a look at a few but honestly I find the sharing of our lived experiences gives me all the information I need.
  • Brenda5
    Brenda5 Member Posts: 2,423 ✭
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    CBD oil before, during and after breast cancer. Get it on the PBS!
  • Janet A
    Janet A Member Posts: 281 ✭
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    I am wondering what has happened to @wingman. Very interested in her studies and research.....anyone know?
  • arpie
    arpie Member Posts: 7,621 ✭
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    As with most health professionals - probably was on hols til mid Jan ...... hopefully we'll hear from her soon, @Janet A

  • iserbrown
    iserbrown Member Posts: 5,554 ✭
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    This is @wingman only post looking for ideas on research. 
    My guess between us we've offered a lot of thought and it needs to be workshopped into possibilities
    Here's hoping we've created opportunity for future research 


  • Patti J
    Patti J Member, Dragonfly Posts: 589
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    Mmmm... The cynic in me says that we won't hear any more from @wingman. She has her ideas now. She doesn't need us any more.
    Years of working in the public health system have made me extremely cynical about researchers.
  • iserbrown
    iserbrown Member Posts: 5,554 ✭
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    Agree
  • Zoffiel
    Zoffiel Member Posts: 3,372 ✭
    edited February 2019
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    It's possible the consultation phase is now complete.
  • Romla
    Romla Member Posts: 2,092 ✭
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    @wingman has 4 young kids and like most working mums taking time to be with them during school holidays. 
  • kmakm
    kmakm Member Posts: 7,974 ✭
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    Medical research takes years. If she or her colleagues chose to research something we suggested, it would be a long time before results were known. We could have suggested areas that are already being looked at. Grant applications have to be written, approved, studies designed etc. I was pleased we were asked.
  • Zoffiel
    Zoffiel Member Posts: 3,372 ✭
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    If she has what she needs, she should probably ask for the thread to be closed. There are a number of 'ghost' threads which are not helpful for new players who find them and reactivate old discussions when a new one would be more appropriate. Mxx
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